Monday, April 13, 2009

Update On Bennett's Heart...

We finally got some good news!! The leaky valve that they saw before is now "trivial" and they said "everything with your baby looks really good"! When is the last time I heard that?? Thank you Lord!! They were looking for enlargement of the heart or if it was overworking but it looks great, of course there is still a hole in the middle of it but that's not a huge issue to these docs. They can fix that. The doctor called it a very well balanced AV Canal defect as opposed to an unbalanced one, so that's good! So things are going as planned and I will deliver at my local hospital, with Bennett going into surgery at around 2-4 months. I have requested Dr. Spray for Bennett's surgery, being told by numerous people, that he is the best and they said they will try to honor my request as long as Dr. Spray is not traveling at the time. I feel very confident that any of these surgeons will take good care of Bennett but why not ask for the one I've heard of, right?

After the fetal echo we went to tour the Cardiac Intensive Care Unit. Not going to lie, this was hard. It took everything in my power to not burst out in tears as we walked through there. It was a very nice looking unit but glancing to my right I saw a little baby in his or her diaper, someones son or daughter, hooked up to machines. Just thinking about it makes me tear up. I saw exhausted parents camping out in their rooms, a mom holding her baby while hooked up to machines, nurses stationed in front of computers while they monitored the babies. This will be us, I thought, by the end of the summer and we've kind of been here before. Visions of the NICU flashed through my head. Although I know going through the experience we did with Ainsley being in the NICU for 5 weeks only made us stronger, it is never easy to see a baby hooked up to wires and machines, especially when the baby belongs to you and especially when you're baby has gone through surgery. That will be new to us, the surgery thing. But you never forget the beeping sounds of all the monitors and that fear when you hear one of the machine alarms going off. I know I should not dwell on this now but today made it all real. My son may have to go to the NICU when he is born, my son will have Down syndrome and one other little thing, my son is going to have open heart surgery. Okay, that was really hard to write. And while I am so thankful I know all of this ahead of time because it's not like I cry about this every day and really I haven't cried about it in quite a while, it's just when you see a tiny baby that is recovering from whatever type surgery or illness, it breaks your heart. I just want to make it all better. I just wish it didn't have to be this way.

I know Mike had a hard time walking through the cardiac unit as well. Having Ainsley in the hospital was really hard on him and I know he's trying to be so strong through all of this. And then that guilt thing comes creeping back in, I'm the one that wanted to have a third, if I hadn't pushed to have just one more, we wouldn't be in this situation, Mike wouldn't have to go through having another child of his in the hospital or to have to raise a child with special needs. I don't know when I will be able to let go of that guilt. I'm hoping it's when I see Bennett for the first time and see Mike hold him. But I think that's going to take God changing my heart and how I see things. I have no doubt that Bennett will be a blessing to our family, I just know he will but it's still not easy when you think of the potential challenges. We will get through this and I'll be fine with all of it again tomorrow. I refuse to dwell for more than a day on the negative so my only other option is to remain positive. I think today was bitter sweet, I was excited to hear some good news but then saw what we still have to overcome as far as Bennett's heart is concerned.

I started reading a book called "Calm My Anxious Heart" by Linda Dillow and I have a feeling it is really going to be helpful in my life right now. Thanks Lex! And thanks again for all of your prayers!!! Today we definitely had a prayer answered, no Bennett's heart is not healed but it is healing somewhat I believe, no matter how small!

13 comments:

That is great news! I can't imagine how scary the surgery aspect of all of this must be, as I didn't have to go through that part, but I'm sure he'll be in very capable hands and will heal very quickly. It's amazing to me to see all the big strong active kids that come to our local swim event each summer with those faint lines down their chests and remember that they were such tiny little infants back then when they went through their surgeries. Bennett will be one of those big strong active kids before you know it. Prayers for the rest of your pregnancy to be uneventful and for peace for both you and your husband's hearts as you prepare for his arrival. It really is going to be OK. I promise. :) Take care!Marla (mom of 4, including Jakob, almost 10 years old with Ds)

Bennett will be glad that you made the decision to have him, and all you have to do is follow his lead :) Our children bring the best gift with them, which not everyone gets to receive. Luke has the best smile in the whole world, and he is the other love of my life! I wanted 3, and my husband was fine with just the two, so I know how you feel. But we made the decision together, and both would NEVER give him back.

Plus, you are giving your husband a son you clever lady, and that's special too. Our boys will love us and be proud to be seen with us long after the others cringe with embarrassment, and will likely be way less hassle in their teenage years, or so I've been told.

I'm happy to hear you had good news on the heart check. Enjoy these last few weeks - I know, it's easier said than done. Soon, you will have the most precious son in your arms. He will bring you, Mike and the entire family so much love and joy. We will be praying for his safe arrival and many prayers for you and Mike.

Wow, you are an amazing Mom. People always ask me if I wish I would of known before Sam was born and I really don't know, I don't know that I could of been as positive as you and could of handled it as well as you and your husband are handling it. Your family is in our prayers and I am so happy for your good news.

Oh sweetie......just remember, just because you asked and wanted a third baby, GOD didn't have to grant that request. You may feel it's your fault because YOU wanted a third baby, but GOD has already planned for you to add a third child, whether you asked for it or not. HE wanted Bennett to be a part of your family. HE wanted him to be blessed by being in your family and for you to be blessed by this little guy's presence.

Yeah, it changes the way you plan for the future and that you need to plan for Bennett's future and make sure he's taken care of later in life and that you may go thru some speed bumps along the way.....NICU, heart surgery or whatever else, but GOD knew that already and was preparing you and Mike.

I was praying for you this morning. I'm glad you got some good news for a change. I can't wait for him to join your family!!!

Oh, you're really doing so well. I'm glad to hear the update about Bennett's heart! It's healthy for you to be scared and have questions; it's all part of the healing process.

I know this may sound a little strange, but to my husband and me, open-heart surgery wasn't really all that scary. Not to sound callous, but it was a really neat experience. I guess I just had total faith in the doctors and that Benjamin would be okay. I knew that these surgeons and nurses do this stuff ALL the time, and that B was in great hands. But that was just us, and it's completely normal and acceptable to be scared.

The fact that you're saying the words and getting used the idea of having a son with DS is good. It took me months after B was born to be able to say the words without feeling bad about them. So give it time. You'll get there.

Hi! I just found your blog through Our Roads Traveled. I'll have to read more when I'm not at work...but I did see you mention that Dr. Spray would be doing Bennett's surgery. Dr. Spray did my Samantha's surgery when she was 4 months old, and he's WONDERFUL. CHOP is such an amazing hospital, too. We stayed at Ronald McDonald House while we were there, and had an excellent experience all around. Feel free to e-mail me (bateminx@yahoo.com) if you have any questions!! Congratulations, and good luck!

Adrienne,I know that this is a difficult time right now but dont let that get you down. I am glad to hear the visit went well for you. Even though you said that you were the one that "pushed" to have another baby...Bennett will bring more joy and happiness to your lives than you could ever imaging, God is in control and He knows what He is doing in your life. I know how hard it was for me to go through the NICU before William's surgery and even though it is not pleasant it is much better to see what you will be around before the actual day comes. Bennett will be a strong little boy and will be on the road to recovery before you blink. God Bless you,April